Fundraising for Help for Noah

Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease, which means it is inherited and affects nerves responsible for muscle function. Although classified as rare, SMA is the leading genetic cause of death of infants and toddlers, with approximately 95% of the most severely diagnosed cases resulting in death by the age of 18 months. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function.

Although there is currently no cure for this condition there is now a treatment available but unfortunately like many others with this condition we are being denied access to it by NHS England and NICE. We have managed to secure access to the treatment in Europe, the drug itself is currently being supplied on compassionate grounds by the drug company Biogen, but we have to cover all the administration and travel costs ourselves.

Please take a look at our website and justgiving page for more details about Noah and SMA, which also contains links to the main UK SMA charities for the latest information.